Replies to This Discussion

Permalink Reply by Airam-FFA on April 4, 2017 at 1:49pm

I was put on meds that can damage your eye sight but they didn't warn me about having an eye test first!!!!!

Took the meds for 8 weeks. Have decided that risk is too high. It is one thing losing my hair but NO WAY is it worth risking my eye sight.

(The Doxycycline also made me really sick)

Permalink Reply by LVL on April 6, 2017 at 12:30am

Hi Airam-FFA, I agree that it's not worth the risk of damaging your eyes. I will see what the eye doctor says and do more research. I think I'm going to try Monat (hair system of shampoos, conditioners and scalp treatment) I have seen a lot of great results with people with other forms of alopecia. I know it won't grow back what I'm lost but I'm hoping it stops it from getting worse. Last resort would be Plaquenil

Permalink Reply by Dee on April 4, 2017 at 2:11pm

I was also prescribed Plaquenil 2 months ago.   I believe my shedding has slowed down somewhat.  So far I've not experience any negative side effects except for insomnia.  I have a follow up appointment with my doctor in 2 weeks and will ask about the risk of eye sight damage.  This was not explained to me.

Also, can you tell me more about the liquid compound of finasteride?   

Thank you.  

Permalink Reply by LVL on April 6, 2017 at 12:34am

Hi Dee, I'm surprised they didn't tell you it could cause irreparable eye damage! You can look it up online too. As for the compound, I am in Toronto and a pharmacy specializes in compounds. They have compounded minoxidil and finasteride into a liquid which I place on my scalp every night. I didn't notice any new regrowth but since Ive stopped using it, about four months ago I have now noticed a lot more loss. I did read an article that said when you stop using Rogaine which is minoxidil your hair will fall out. So I wish I read that earlier!

Permalink Reply by LVL on April 6, 2017 at 12:36am

Hi Agneta, have you noticed if Plaquenil has slowed down hair loss? Thanks

Permalink Reply by LVL on April 6, 2017 at 8:56am

Ok thanks for the information Agneta :)

Permalink Reply by Will Be Healed on April 14, 2017 at 11:47pm

I have been taking Plaquenil for 2 years. It helped me with inflammation and I did experience hair growth on my temples. I no longer have the red bumps on my scalp and itching has gone away. I had no side effects. I am now also on Finastetide. I have noticed less hair fallout.

Permalink Reply by LVL on April 15, 2017 at 12:31am

Hi will be healed, thank you for your response. That is very encouraging. I just got Plaquenil today and will start this weekend. I am also going to try Monat hair system. Hopefully the two combined will help the fallout and receding hairline. Thanks for your message!

Permalink Reply by LVL on April 17, 2017 at 10:11pm

Hi Will Be Healed. Did you have any reaction if you drank alcohol on Plaquenil? Not that I drink a lot. Just socially, but am wondering if alcohol makes you sick on this medication? Thanks

Permalink Reply by Will Be Healed on April 23, 2017 at 11:49am

I don't drink a lot either, but when I drink the occasional wine I see no negative reactions.

Permalink Reply by Kathy in Denver on April 23, 2017 at 10:42am

I went through this decision back in December and decided to go for it. My doctor has had great success with it and treats an increasing number of us with the growth in autoimmune disorders

I have a wonderful eye doctor with patients who have been on it for 20 years for things like lupus. He gave a very thorough explanation of how they monitor the risk which is far overstated and misunderstood based on my research and how the onset of damage can now with the right testing protocol be identified long before there is permanent damage. SciEnce and advancing technology can be a beautiful thing! I talked directly to one person who has taken it for 18 years with no problem at all

My symptoms started to subside within a few weeks. Four months later I have no signs of inflammation and not only has hair loss stopped I have an increasing amount of broth around the scars.

The other important thing, I believe, is healthy eating with a strong focus on elimating inflammation. I am following the Alcat protocol. My doctor said she can no longer deny the importance of diet as the evidence/patient experience is too compelling. I am also an advocate of yoga and accupunture. Good luck!

Permalink Reply by LVL on April 23, 2017 at 5:33pm

Hi Kathy! Thank you very much for your encouraging reply. I started Plaquenil on Monday and also started using Monat hair treatment system. I'm glad to hear a positive response to Plaquenil.

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